Voices Volume Five - Disability

Voices VOLUME FIVE

Voices is a collaborative project between FXU, Her Campus and The Falmouth Anchor, providing a platform for students whose voices might previously have been lost in the noise.

Trigger Warning This volume contains language which may be offensive to some readers and references to suicide which may be triggering to survivors.

If you need to talk to someone, please contact the Student Support Services team or visit samaritans.org

VOICES VOLUME FIVE DISABI LITY MAy 2018

Rac h el O’Bri e n N US D I SAB L ED ST U D EN T S' OFFICER

foreword

B

eing a disabled person can often be a lonely and isolating experience. Even more so as a disabled student, having to navigate an education system which was not built for us and, in many cases, was built to deliberately exclude us. From inaccessible buildings, to reasonable adjustment procedures that require jumping through endless hoops and paying for dozens of doctors’ notes, to overpriced accommodation - barriers exist at every stage and in every sphere of our education.

As a disabled student coming to university, I too was subject to all of these barriers. But even more perniciously, for too long I was made to feel like I was the problem.

But going to university for the first time also presented other, far more positive, experiences as well.

For the first time in my life, I met other people like me and this gave me something invaluable - the language to describe my experiences and the oppression I was facing, and a group of friends and comrades with whom I could fight with to change my campus, my city and the country.

Getting involved in disability politics and organising was life changing. I learnt about the social model - that society disables people with impairments - and I learnt that I was not broken. I fully believe that this is what saved my life, and the reason I am still here today, campaigning for disabled people’s rights. I learnt about the rich and vibrant history of resistance of disabled people both in the UK and around the world - and it gave me the confidence to realise every time I had been previously told I couldn’t do something, it wasn’t because of me, it was because of structural disablism. And I learnt about disabled people’s organisations - a move away from the patronising imagery of charities to organisations controlled and run by disabled people campaigning on everything from inclusive education, to access, to justice.

Resistance is important. Resistance is what defines us as disabled people, both in our previous and future victories.

From chaining themselves to buses in the 90s in the struggle for civil rights legislation, to mental health inpatients organising service user and survivor groups in the 70s to successfully campaign for many of the rights that we take for granted when we access mental health support today. Our power when we collectively organise is immense. And that hasn’t ended. In the wake of brutal Tory austerity, disabled people’s movements have been at the forefront of the fight for a fair and just society - doing everything from pushing for a UN report on human rights abuses against disabled people, to blockading traffic on Westminster Bridge to protest disability benefit cuts.

Disabled people are all too often told that politics and activism isn’t for them. This is a lie. Voices is political.

Sharing our experiences is political. Education and understanding our history is political.

Think about where to go from here - don’t let this just be one magazine. Build a group, come together, collectively organise to change the world. Because we, as disabled people, can do anything, change anything, when we fight together.

L UC Y SCOTT

D

isability is incredibly irritating. I mean, it’s irritating having a disability, but for me the word itself is irritating, which is ironic given I am a Co-President of the Don’t DisAbility Society.

And despite our name using a pun to point out exactly what irritates me, I still don’t enjoy saying our name. Within the society we tend to stick with the word difference not disability. Disability simply sounds negative.

What I have learnt the most from the Don’t DisAbility Society and being a ‘disabled’ student is that disability isn’t just someone in a wheelchair. Even this week, when I raised field trip accessibility needs with senior figures at Streatham campus, one of them said, “Oh, you mean for people in a wheelchair?” Yes, Professor, of course I am badgering you about why the middle of the bloody rainforest isn’t wheelchair accessible. Disability includes chronic health conditions, mental health conditions, brain injuries, learning differences, sensory impairments, physical disabilities and yes of course this includes wheelchair users. I fall under the categories of obvious physical disability and chronic health condition. But even ‘disabled’ people can be ignorant about disability. When I started university, I was nervous about joining Don’t DisAbility because I ‘didn’t think I was disabled enough’, despite using a walking stick.

Some people call this denial [I call de Nile a river in Egypt].

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L UC Y SCOTT

It might surprise some people, but had you asked me two years ago, “Are you disabled?”, I would have answered no.

Saying that today, I would probably also answer with, “No, the stick is just for show so I can get a seat on the bus”.

Let me explain. I was born with chronic health problems affecting my kidneys, meaning I’ve now endured at least 29 kidney infections and a couple of bouts of sepsis. By the time I reached my teens I had finally outgrown this (or so we thought). I only became physically disabled aged 13. I had a pubertal growth syndrome (sounds sexy, I know), called bilateral Slipped Upper Femoral Epiphysis (try saying that when you’re drunk). Essentially, I went from short to tall a bit too quickly and the relationship between my hips and femurs broke down and it nearly ended in divorce. So, if anyone says puberty hit them hard, they may be speaking more literally than you think.

By 16 I had osteoarthritis in one of my hips, which was severe by aged 18 and with a couple of slipped discs to add into the mix something had to give. Eventually, aged 19, a couple of months before starting university, I was using walking aids on a daily basis. At school, despite having been in pain almost every day from the age of 13, I could hide my condition. Therefore, in my eyes, I wasn’t

‘disabled’, or at least I didn’t want to be associated with the negativity surrounding the word.

Something that will shock some and confuse others is how much I get asked, “What’s wrong with you?” This is shocking because in my eyes there’s nothing ‘wrong’ with me, I just have a difference. It is ok to ask, “what is your condition/difference?” Others will be confused that this is shocking because it is used so commonly in everyday language. I’ve even had academics say it to me. When I get asked, ‘what’s wrong’ with me it reminds me that in some way I am not equal and how much I hate having an obvious physical disability. Having said this, having an obvious physical disability makes life so much easier when it comes to speaking out and accessing help in comparison to hidden conditions. But having been asked, ‘what’s wrong’ with me, so frequently, I have come up with some unique responses. My personal favourites include: got struck by lightning, got hit by a bus and best of all; I stalk people who show a keen interest in me.

Whilst writing this piece I have reflected a lot on my personal experience and thought about how I am

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No, I haven’t done well “given” the circumstances, I have done well.

perceived. I’m probably most known as being chatty, confident, and funny (sometimes even on purpose).

They say laughter is the best medicine, for me that is particularly true. Last summer I almost died from septic shock having only felt unwell for a couple of days. And whilst it was a truly horrific experience, amongst the delirium an amusing memory stands out. At one point, I had a doctor and nurse on every limb trying to access my veins for the vital antibiotics. My skin was burning even with a light touch, but I was being physically restrained. After what felt like a lifetime of being slashed with swords (obviously just miniscule needles), the lead consultant finally succeeded by stabbing me in the ankle.

And at the that moment I lurched forward and yelled at the top of my voice, “You holy f**ker!” My dad responded with, “Yep, she’s back to normal”, and the medics laughed.

I hope that I am perceived mostly with my positive attributes, but at the end of the day I’m simply angry.

I am angry that the first impression everyone at university has had of me is a disabled girl. I am angry that I constantly get asked about health before my work or activities. I am angry that I was nearly robbed of

my life and have to live with the physical and mental consequences on a daily basis. I am angry that my peers whose disabilities are so much tougher to live with than mine are less angry than me. Most of all, I am angry that almost every achievement I have reached over the past 8 years has been met with, “hasn’t she done well given the circumstances?” But instead of letting this anger eat me up inside, I use it to prove that I am equal. And in doing so, I have achieved far more than I would have otherwise and for that I am grateful. So, no, I haven’t done well “given” the circumstances, but in spite of them. I have done well.

To quote my mother. “Life has handed you a pile of sh*t, but your pile is a lot smaller than some people’s, remember that.”

My advice for anyone going through a tough time facing disability, health conditions or any other adversity is that it’s ok to be angry. You’re allowed to be angry but don’t let your anger or difference define you. Don’t use your adversity as an excuse, use it as a motivator. To quote my predecessor, “Use your difference, to make a difference.”

L E XI GOO D LAN D

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W

ith the theme of disability, a lot of people will think (and rightly so) of people with physical disabilities where they’re physically unable to do things.

There’s quite a stigma and some stereotyping around it, like with the disability badge; you know it’s the person in the wheelchair. I think sometimes other disabilities can get swept under the rug. Personally, I’m referring to mental illness which I have suffered with, and it was really hard for me coming to terms with the fact that it wasn’t all in my head. It took a lot time for it to click that it was okay to see myself as disabled in that sense because the actual definition of disability is an impairment that means you’re not always fully capable of doing things.

I struggled with anxiety and depression really badly for over a year. I found that I couldn’t function properly and I kept feeling so guilty and hating myself, because I couldn’t deal with things the way other people did. My mind kept spinning out of control over things that other people wouldn’t have two thoughts about. It wasn’t until somebody said to me that if people who can’t walk ask for help, you should be able to ask for help as well. Just because you can’t see it, it doesn’t mean that it’s not there and people forget that. It’s so easy to pretend that things in your head aren’t really affecting you because it’s not physical and you can’t see it, so many people will struggle with it but people won’t know and won’t care as much.

People always say that it’s all in your head and it’s really not. For me, I don’t want to say that mental illness is more important - I’m not saying that, I don’t think that - I’m just saying that it’s not regarded as much of a problem as other physical disabilities.

Unless you’ve struggled with it, I really found that it’s so hard to explain to people how it feels and why you’re feeling that way. It just doesn’t make sense and unless you’ve actually experienced it, it doesn’t make sense. It’s only people who have experienced other mental illness - not just anxiety and depression, there are so many other mental illnesses – and it’s the people who have gone through it who can really understand it. I didn’t understand it until I went through it and then I would talk to other people who were going through it. One of my housemates suffers really badly with depression and I can now relate to it and totally understand where she’s coming from.

I just think it’s important to remember that there are other things that disable you from living life to the fullest, like mental illness. Some people are lucky in that they can overcome it. I think I’m really lucky that I’ve been able to deal with it and control it, but some people obviously can’t and it will affect them just as badly as a physical disability.

W I LL I A M H ARK E R

I

’m officially diagnosed as a high functioning autistic, but that’s such an awkward diagnosis because I can also be diagnosed as having Asperger’s as well. The diagnosis process itself is just mad, but one of the good things about having a diagnosis for a disability that isn’t physical is that people will not believe it’s valid until you have an official diagnosis and then a lot of things change. When I say people I usually mean administrators, that kind of thing. I feel like having a diagnosis is important for two reasons.

You now have the ability to find out in more detail how your brain works. My brain works a lot differently to how a neurotypical person’s works; it processes information differently. Everything is just different. And with an official diagnosis you get allowances that have been helpful for me at school and University in ways that you don’t think about until they are given to you.

I want to talk about how this University has been great. I moved from London to Cornwall.

For normal people that’s a culture shock. For an autistic person it’s wildly different. Have you ever heard the phrase, ‘London is the city that never sleeps’? They’re not wrong. At 2am on any given I can go out and find things to do. London never sleeps, transport is still open until 5AM in places. Cornwall has forced me to be on a schedule that actually means sleeping at night. But my environment completely changed, and in my first term that was incredibly stressful, having no places that I was familiar with, living in the same house for the last 19 years. Moving to Cornwall is a completely new environment.

The good thing about coming to this University was that there is a better support network than I was expecting. FxSpectrum is a genuinely good thing for people like myself and gave me other

people to talk to who were similar to me and had a similar outlook. I felt very safe in getting advice and that was important to just a first year who was getting anxious about everything. The Accessibility Team is really good and at all times are doing 100% to make sure that I do well at the University, no matter how hard I make it for them.

This University is brilliant in the ways it handles people with disabilities, at least with Autism. I’d like to think that the people with other disabilities are also treated as well as I was, and I think so from who I talk to. I think they really care, there’s a lot of caring at this University. Whether my problem is related to my disability or not, I can find someone and they will greet me with a smile and they will help me sort out my issue.

The thing I’ve had to learn, that people with Autism haven’t, is how to socially interact. I have to think about how to do that, something that they won’t have to think about. They don’t have to think about their body language or the way they talk or the intonation of their voice, whilst doing everything else. I don’t think there is a good thing about being autistic. It’s not in the way mass media presents it, oh he has some social issues but he is a super genius at maths. That’s very rare and not true to most autistic people.

I’ve learned to deal with people differently and most people find me quite nice to talk to, because people will tell me things about themselves and I’ll be genuinely interested in how other people deal with their issues. I don’t know until you tell me, I don’t know what’s going on in your head.

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R E B ECCA WALKE R

15

S

o both my parents are disabled and I’ve grown up as it being a normal thing. It’s never really had an impact on my life because they’re just normal parents. Me and my younger sister are not disabled in anyway. My dad had spina bifida and my mum has cerebral palsy so it was a bit of a shock to people when we were both fine. I suppose people were always sceptical whether my parents could be parents and didn’t think they would be able to bring up kids because they had to look after themselves more than the average person, but to me, they were the best parents I could ask for.

It’s strange to talk about it because it’s such a normal thing. I think when my mum had me and I was about two years old and she was pregnant with my sister, she was taking me back home and this woman followed her home telling her she is not fit to be a parent. Obviously I can’t imagine as a mother how that felt. You do your absolute best and to be told you shouldn’t bring up people. But I think that I’m alright and my sister is too. So I can’t imagine what both of them went through before and after having us. I’ve never really thought about it from their perspective because it is so normal.

I suppose my sister and I had to learn things earlier on that other kids didn’t until later on in life, not necessarily grow up quicker, just how to look after ourselves in case one of them was ill or couldn’t reach something at a height, and I’m only 5’2 so I had to learn how to climb up safely. But again, to me, it doesn’t make sense why people have these preconceived ideas about disabled people and their ability or inability to do certain things. This is something I am passionate about when I think about it.

E LYSE EM ANUE L

I

don’t consider my Tourette’s Syndrome a disability. However, for others it will be, due to the long-term and substantial effects it will have on them to carry out their daily activities. It is a spectrum disorder and I think I can speak for most people who have any severity of Tourette’s, that the limited representation portrayed of it in the media and within society is largely inaccurate. There are definite changes and improvements to the representation of individuals with neurodevelopmental disorders such as autism spectrum disorders, ADHD, or Tourette’s. But far too often, mostly within daily life, these disorders are still largely misunderstood, stigmatised and often the butt of hurtful stereotypes and jokes.

I can have pretty much any tic under the sun, both vocal and motor. The stereotype of Tourette’s being severe uncontrollable swearing isn’t a genuinely accurate portrayal of the condition. Tourette’s is about as prevalent as autism, so it often makes me laugh when people say that they have never encountered someone with a tic disorder until me. The chances are you have, as Tourette’s is more often that not, not swearing/obscene tics, as coprolalia only affects 10% of individuals with TS and even then it’s usually not as severe as the media portrays.

I don’t tic that much anymore, I can go hours without, it used to be much worse.

Not to negate the troubles I have been through with my co-morbid diagnosis of Obsessive Compulsive Disorder and Tourette’s Syndrome, but my life is generally now not negatively impacted by

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E LYSE EM ANUE L

beep, beep you’re a spoon

them. Adolescence was often hell, navigating the torment and unrest of my brain constantly working against me, but I have come out the other side. This was from extensive support, therapy, a combination of medications for a while, and learning coping skills. Ticcing is like breathing to me, it rarely bothers me. A lot of my tics are vocal and centre around vegetables and animals, although this isn’t really how it works, I like to think my tics subject choice are sometimes a representation of my interests.

To say when my TS started is ineffectual as I’m sure I had mild motor tics in childhood but no one noticed or was phased by it. I started having consistent tics from the age of 15 and received my diagnosis at age 16, at the same time when I was diagnosed with severe OCD. Several years of my life were incredibly challenging for me and my family, as my intrusive thoughts kept me in constant distress and

my compulsions surrounding checking, germs and health anxiety became outrageously time-consuming and anxiety inducing. Often, it could take an hour to leave the house after getting ready from consistent checking, more often than not I was reduced to tears and my intrusive thoughts plagued me every waking minute of the day.

At Great Ormond Street, where I was diagnosed, we worked out that I’d had OCD since very early childhood, maybe at the age about 3 or 4, and that it was incredibly deep-rooted. I started exposure therapy and tic therapy at the National OCD Centre at the Maudsley Hospital.

It was gruelling but to this day I am so thankful, firstly for the NHS existing so I got the best care and treatment possible from the best experts in my conditions for free, and secondly that I really finished it.

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I had some challenging times after finishing therapy, as I had other mental health issues to work through, but during my gap year I did 5 weeks of 3 days a week, all day, therapy at the Neurology hospital in London and since then I only continue to get better and better.

Of course, I think life would have been easier if I didn’t have these conditions but in some ways they have prepared me for the challenges of daily life better than anything else and forced me out of the privileged bubble I lived in, where nothing had ever gone wrong in my life.

I know my brain operates on a slightly different plane to other people’s in terms of academia, social skills and practical skills, which was challenging at times but also has immense benefits. These disorders usually prove to have enhanced intelligence in some aspects of life, for me, that’s through academia. I am good at processing information and mostly do well in standardised tests. I

have great recall for tiny details. However, things like sarcasm and obscure jokes are quite difficult for me to grasp. I also don’t get embarrassed easily or insecure about insignificant things, like most people my age, as I have already dealt with people in public staring at me and making comments when my tics were severe, so I’ve dealt with the brunt of it already.

For my family and I to cope, we use humour. Unless my tics are physically painful for me, we laugh about them. We have names for our favourite tics, some of the repetitive ones are ingrained into our dialect now. One of my most consistent tics is saying ‘beep, beep you’re a spoon’ and it has become a way of expressing affection between my family members and I. I like to think of myself as living proof of recovery, in which to flourish you sometimes have to flounder first.

AL E X A W EBST E R

I

shouldn’t be here. I shouldn’t be working in Falmouth, with a partner I love and a job I’m passionate about. I shouldn’t have been your FXU President Community and Welfare for one year, let alone two. I shouldn’t have graduated. I shouldn’t have done a degree, or been a Student Rep and a Student Mentor.

I shouldn’t have applied for university in the first place - much less completed three years of college. I shouldn’t have lived past the age of nineteen.

Growing up I was never the special kid in school who had the bright future ahead of them. I was bullied, and one of the art geeks who hung out at the skate-park and skipped PE. My weekends and evenings were spent hiking, horse riding, rock-climbing and, more than anything, it was spent drawing. Being a graphic novelist was my dream. No, I wasn’t special, but I was one of the best artists. It was a stamp of pride I wore. It made me myself.

Then, in my final year of A Levels, I became ill. The illness was glandular fever, giving me liver failure and leaving me bedridden for three months and out of school for closer to five.

After appearing to improve my health once more started to decline. I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome (ME), something my body had gotten postvirally. I describe it as similar to my body getting a computer virus; the computer fought off the virus, but it would never work the same again. I was left permanently disabled, relying on a walking stick and wheelchair.

The life I had thought I would have shattered like glass. I dropped out of my A Levels. I could no longer walk without mobility aids, and some days I would wake up all but paralysed

from the neck down. My mind was taken from me and replaced with memory loss. Constant exhaustion, headaches, and pain in every joint ruled my life. And more than anything, my hands were taken from me. I could no longer draw. The thing that made me myself, that was tied into my entire self-worth, was gone. It wasn’t just my life as an artist that was gone, but the entirety of my life as I knew it.

The future was less than bleak, it simply felt empty. I enrolled in college to do an A Level in photography to appease my parents. I watched my school friends go on to university - the same friends who had spread rumours that my disability was a lie to get out of doing my A Levels. It was there, in college, that I discovered what a hate crime was. I had experienced them before, being queer and growing up in rural Derbyshire, but nothing could have prepared me for the next year.

People would trip my crutch out from under me. Every older gentleman who smiles uncomfortably at younger women seemed to think the disability was an open invitation to talk to me, to stand too close, to touch me.

Once, school kids kicked me to the ground, and as my bladder decided that was the perfect moment to empty itself, they stood around me yelling ‘retard’ and filming me on their phones. Some younger kids in college would yell harassment, hide my walking stick, and would push me from behind. The first person I dated after becoming disabled used me to pick up other girls in clubs: ‘poor boy who loved his broken girlfriend, who wanted to be there for her, but missed sex so, so much.’ Of course these girls gave it to him. Who wouldn’t?

His girlfriend was broken.

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AL E X A W EBST E R

We can give in or we can fight

And finally, another disabled person saying they wished they were as disabled as I was, so people would ‘pity them properly’. Someone who should understand, someone I thought was a friend, but instead romanticised the hell that I found myself in. The darkness consumed me, and I went to stand at the end of the main road that passed by my college, watching and timing the cars that went past.

I had decided I was going to end my life. I couldn’t take the pain anymore, the rejection, the constant fear, the feeling of failure, the humiliation. I waited for a truck to go by at speed; I was going to step in front of it and end it all. To escape, to be free. That was what I told myself, what the world had told me. I truly believed, in that moment, that it was better to be dead than disabled.

As I took that step into traffic, to end my life, the song on my iPod changed. One song out of the 23,457 I had on shuffle. The first two bars hit, and I knew the song instantly. It was one that I had sung to, cried to, laughed to, played more times than I could count. I didn’t need more than two bars. I only needed the first, to stop where I was and for the truck to go past.

I have done the math since. The chance that at that moment that song would play. It is 1 in 550,230,849. The chance of me being alive today is 1 in 550,230,849.

The song that played was Hold On by Good Charlotte; a song literally about not taking your own life. The irony caused me to double up in laughter, and in that moment I realised I could still laugh. I had the ability to smile, to feel, to have something that caused joy. Although it was from the sheer mockery of a song about not taking your own life starting to play as I was about to kill myself, I remembered that there was something within myself that hadn’t died. Something that all the pain and hate couldn’t take away from me. I was alive, and for the first time in a long time I had hope.

So I turned, I walked back to college, and one hour later I stood in my college elections and was elected to represent my course to School Council. My journey into the life I have now, the life I am blessed to have, started there. That is the moment which led me to being elected as FXU President Community and Welfare, and to dedicating my life to helping others. To making a difference, to being the voice of the voiceless, to supporting others, and to trying to make the world one where everyone feels as if they have a place.

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I wish I could say it has been easy, that I don’t face a daily battle to not step into that road, but I can’t. Every day I fight, as everyone who is disabled does, not just against the world which seeks to erase us but against ourselves who believe these voices who call us broken. Too often I have been asked if I would take it all back, to have never been disabled, and despite everything I still say no. I would never take it back, for if I had never lost everything I would never have found who I truly am. I would never have learned humility, passion, my strength. I would never have ended up doing what I believe I was put on this earth to do, which is to help people. To be the difference.

If that song hadn’t played, or just one song earlier that day was three seconds longer, or if I hadn’t laughed, if the traffic lights had been two seconds slower or the truck going that little faster, I wouldn’t be here today.

We wouldn’t have become warriors alongside each other to fight for the rights of every disabled student on our campuses. If that song hadn’t played it wouldn’t have been just my life lost, but the ones that over the past three years we have saved together.

For a lot of us who are disabled, we reach cross-roads on our journey. We can give in or we can fight. That day, stood on a grey road on a grey day in Staffordshire, I became a fighter, and started my journey to fight for others who felt like they couldn’t fight for themselves.

For everyone who chose to fight we are warriors. To those in the disabled community who faced the internal battle and won, we are Valkyries. To those who have not yet faced the battle within one’s self to keep fighting, to those who haven’t won that battle, please do not fear. For your disabled family are beside you, sword and shield in hand, ready to protect you. And I hope these lyrics help you, as they helped me: Hold on, if you feel like letting go. Hold on, it gets better than you know. Don’t stop looking, you’re one step closer. Don’t stop searching, it’s not over.

Hold on.

JAC O B URANTOW KA

I

have a severe case of Multiple Sclerosis. It took me almost ten years of dealing with, “It’s just stress, come back next week if you’re still unwell”, “Stop making things up and wasting everyone’s time” and “Well if your vision is poor maybe you just need new glasses”, getting my symptoms brushed off as migraines, losing my vision and mobility multiple times, and travelling to hospitals in continental Europe just to get my condition officially confirmed. By the time I got to see a doctor who would take time to look into my case it was too late. The response I got from him was “I’m surprised you can even walk by yourself seeing how many holes you’ve got in there” and that there isn’t much that can be done for me now, unless I want to go onto an extreme treatment, which involves destroying my immune system completely to hopefully slow down the progression of the disease. This, however, increases my risk of catching other incurable conditions due to the lack of said immune system.

There are some strong drugs I can be given to help speed up the recovery from a relapse, but there is absolutely nothing that can be done about my everyday symptoms.

Never-ending, excruciating and mentally agonising headaches, weakness and pain in my limbs, fatigue, hypersensitivity to light and sound, balance issues and cognitive issues have now become a part of my everyday life and have influenced my grades, mental well-being and personal relationships. I can’t recall and remember new things. It takes me so much effort to concentrate and focus on a task. I might suddenly find it difficult to walk and breathe in the middle of a walk. I slur. My attention span is getting shorter and shorter. I need to take painkillers so strong I can’t speak.

I think the most annoying part of it all is how uncomfortable it makes me feel and invisible it all is.

Most of these symptoms make me look like I’m simply lazy, uncaring and clumsy. You can’t really tell anything is wrong with me by simply looking at me and I absolutely loathe feeling helpless and weak. So, I keep forcing myself to be ‘normal’ even though often I’d rather lie down on the floor and cry. I just want the pain to go away. The pain you can’t see and none of us can do anything about.

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A MB ER S KY E- H IGGI N S O N

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I

t has been very interesting. It has been a lot more challenging than I thought. Campus-wise it is a lot harder; there’s a lot of hills, it’s a lot harder to get around and be at places on time, especially if I’m in my chair. In that respect, it has been a real struggle. But I think it has also been a massive help in different way. I can always remember the Pirate Party. I remember I dressed my wheelchair up as a ship and it was possibly the coolest costume there. I had a flag coming out the top and a point in front of my feet, like a ship. It was a great time, I learnt a lot about myself and I met loads of people and for once I felt accepted.

I think at university people are a lot more open about things and they don’t see it as such a barrier. For me, I’ve met many different people from so many different walks of life and I’ve felt accepted by them.

But there have been times when I’ve felt less accepted and I think it comes with the nature of my disability.

I’m an intermitting wheelchair user so sometimes I can walk absolutely fine and other times I’m pretty much bound to my chair because I’m in that much pain. I think people can really struggle to get their heads around that sometimes, because one day I’ll be walking, one day I’ll be using a stick, and the next day I’ll be in my wheelchair.

I think people have accepted that and said, ‘hey, it’s just Amber’, and then other times they’re more cautious or questioning of me a little more, just because it’s a little bit more unusual for a disability.

I think, generally speaking, people are really willing to help.

I remember it was one of my first days at university and I’d never really experienced this before because people back at home weren’t so accepting or weren’t as understanding of it. I was trying to get up from Glasney Lodge to the Stannary which is quite a big hill – I’ve now learnt that I can go through two lifts and around a corner and I’ll be fine – but I remember trying to get up that hill and it was really hard. The thing that made it so much easier was people coming along and saying, “do you need a hand?” and offering to push me without me really having to ask. For me that was a huge deal because not only had I always had somebody with me to push me, but when I was left on my own, with this independence, it was really hard.

I think one of the biggest moments was when I actually tackled that hill by myself. So many people walked past and it took me about ten minutes and so many people offered to help me, but I was like “no, no, I’ll be fine”, because I wanted to prove to myself that I could do it - and I could. I did it. It’s little achievements like that which make you realise, just because somebody’s in a wheelchair doesn’t mean that they’re any different to anybody else.

I still have my emotions, I have goals, I have dreams, I still have everything that everybody else does, it just means I might need a little bit of help along the way, and whether that’s in my wheelchair, if I’m walking, or I’m using my stick: it doesn’t matter.

H A MI SH T H O M P S O N

W

ell, it’s funny, when I was younger there was one thing my dad always used to tell me about defining myself as a disabled person, because he had callipers when he was younger. It’s totally politically incorrect but he said, “There’s a difference between a cripple and a retard”, and he always saw a cripple as being someone who was mentally bright but has physical limitations and problems. Of course, I wouldn’t ever talk like that publicly and say, “Well I’m a cripple”, in public, but that helped reduce the stigma of being disabled in my own head.

There are so many ways to say you’re disabled and often people are lumping it all into one, which I find rather difficult. Some people think just because you’re physically disabled you definitely must have something wrong with you mentally as well, and it’s hard to draw those parallels and I don’t know where they come from, but I guess it’s just a part of society. I think that the mentality going forward for me was that I wasn’t going to let physical barriers block me from doing what I wanted to do.

I knew that I wanted to be a filmmaker from when I was young. I love film and I love being able to tell stories, but there have been times where my physical disability has blocked me from doing that. A good example that I used to bash myself with was; I thought I couldn’t use my wheelchair on a film set because it made too much noise.

I always used to tell myself that I couldn’t do that, but I never told myself that there’s stuff beyond the set and I’ve been really invested in writing scripts. I love being able to tell my stories, and from my perspective as well, which is something this industry lacks. There are some great attempts to tell stories from a disabled persons perspective. Andy Serkis is a great example with his film Breathe which stars Andrew Garfield, about Polio, which is what I have. He’s fantastic at directing that, but there’s still a long way to go, and that’s what motivates me because there is a huge stigma for disabled people to not be able to do what they want to do.

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H A MI SH T H O M P S O N

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I gave my CV to five people in my gap year for a Saturday job and none of them came back to me. I don’t want to think it was to do with my disability, but my CV was tailored for these places and I was pretty well qualified to work in a place like a phone shop. But talking to other disabled people in a similar situation it seemed there were difficulties getting into the workplace because of accessibility.

I’m from North Devon in a very small town called Barnstaple. Getting to Uni came with a load of challenges, all of which came down to funding. It costs to be disabled.

You have to get funding for things the NHS can’t supply – a decent wheelchair and other equipment that they can’t give me. Coming from a small town, I was the first disabled person from the town to go to University, so the social services team didn’t know what they were doing. I had to battle them to find funding for care which I need at night, I need funding for carers so they have somewhere to go instead of the same room as me, so getting here was incredibly stressful.

But now that I’m here, it’s opened so many doors for me.

I don’t think I could have a better course, the Film School are so incredibly supportive, willing to go out of their way to make sure everything is accessible. The feeling of success after getting through those challenges is a good feeling, it just feels like that obstacle shouldn’t be there in the first place.

I think being disabled has given me the chance to look at everyone else’s health in perspective. You do learn a lot navigating through these things and it’s good to get these voices out, which is why something like this is so great. I feel like it’s important that you can speak up about being disabled, it does a world of good. We are making progress but there is still plenty more to do.

B E L I N DA H UM PH RI ES

Weren’t you paying attention?

I

have a conductive hearing loss in my left ear and, therefore, I wear a hearing aid. I have been hard of hearing since Year Nine due to a serious ear infection but my hearing loss wasn’t diagnosed until Year 11. I first realised my hearing might be an issue when my friends were whispering to me in class but I couldn’t hear anything they were saying. They would often make comments like ‘aha you’re so deaf.’ Little did they know that I actually was. GCSE exams were hard as I could never hear what the invigilators were saying, and I even left early after a maths exam after mishearing what one said, leading to embarrassment in front of the whole year.

After my first term at uni, I realised what little support I had at school. Most teachers didn’t even know that I was hard of hearing, and even if they did they would make comments if I got something wrong like, “you should have been listening,” or “weren’t you paying attention?”. I had no specialist equipment either to help me so I was forced to sit at the front and lip read for class after class. It’s amazing to see how things have changed!

The support at university has been far greater. Through the DSA I now have specialist equipment meaning I can sit where I want in lectures and still hear the staff, who all are very understanding of my needs. What has been most beneficial to me is the support I’ve gained through a couple of course mates who are also hard of hearing.

Sharing and discussing our experiences helps us to not feel isolated and ashamed of our differences.

All this being said, I still face challenges as a person who has a disability. The availability of subtitles is a massive issue on adverts, live tv and especially in the cinema.

Although I am very open about being deaf, most people are shocked when I say I’m hard of hearing as my long hair normally covers my hearing aid. I like to raise awareness of hearing difficulties through short films and discussions such as this!

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MATTH E W TAY LO R

T

his story is about my brother.

Jack is severely autistic. He has very little in the way of spoken language, and so I feel like I need to use this platform as a way of speaking up about his experiences on his behalf. Everyone who has autism experiences it

differently. Some traits are more common than others, but it is immensely nuanced. Jack’s quirks are roughly as follows: he enjoys being in a strict routine — and becomes very stressed when that routine is broken. He enjoys specific food in a specific way, and he has an insatiable appetite. He repeats dialogue and noises from songs,

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videos or books that he likes in order to ease his anxiety.

He also likes to carry certain objects and dress a certain way in order to reduce his anxiety further. Jack sometimes struggles with concepts like empathy, privacy, sharing and politeness. He also has obsessive compulsive disorder.

Needless to say, he requires a lot of time and attention.

It’s weird writing this all down because for our family, this is all our normal. He’s my brother, and I love him.

He shows affection in his own small way, whether it be a small hug or a smile or a simple ‘thank you’. It all feels so normal, but that also doesn’t mean it is easy. My parents took (and continue to take) the large majority of the care work, which is immensely stressful for them. The simple

MATTH E W TAY LO R

routine of going to bed for any regular person is a fairly quick one, but for Jack, can take up to 5 or 6 hours. The prep for bedtime used to have to start pretty much as soon as he was back from school. Their determination to take as much of the stress and pain from me as possible is what has allowed me to flourish and become who I am today.

Throughout my teen years I will openly admit that I wasn’t as understanding of Jack as I should have been. I wanted privacy, but his OCD meant that every door had to be open as wide as it could go. We managed to teach him that at night, doors should be closed — but to Jack this meant that he had to slam every door to make sure that it was as definitively closed as possible. I despised some of his habits, I was really sick of living with him. The years and years of Jack finally going to sleep at 3AM after slamming doors for hours were awful. But for my parents in the next room, it must have been even worse - and then

for Dad to wake up for work at 6AM and do it all again, I never grasped how they had seemingly infinite patience.

I think I was about 16 or so when I snapped out of my teenage angst and my attitude towards Jack started to shift. I had spent the day in Birmingham with one of my best friends and was travelling home. I remember I had left my key at home. Mom was in looking after Jack, so I knocked the door. I waited and then I knocked again, a little louder. Mom ran to the door, fumbled with the latch and through tears screamed, “Jack’s having a seizure!”.

Everything was a blur. I faintly remember propping his head up with a cushion, Mom trying to hold his head still whilst he was thrashing, his eyes were glazed over.

He came around a few minutes later, achy and very disorientated. I remember Dad rushing home from work, paramedics, it was all terrifying. Since then, Jack has been diagnosed with epilepsy, which is disproportionately

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common amongst severely autistic men - usually after they go through puberty. He’s had many seizures over the last 6 or 7 years, but I remember that one the most vividly. It made me realise how, even though he is a little strange, it would be infinitely more strange to not have him around anymore.

For just over a year now, Jack has been living in a fulltime residential home, looked after by care workers who understand him, accommodate for him and help him navigate the world in his own special way. My parents struggled to adjust to living without him – to have the axis around which you revolve suddenly shift one day was really tough, but I think they’ve found a happy medium where Jack is growing and they have a little time for each other once more.

Mom spoke to me recently about enjoying everything twice. Jack has lost his liberty, and has never been able to enjoy moments of solitude - and because of this I should jump at every opportunity I get. I hope to spend the rest of my life living enough for the both of us, and I hope when the time comes for me to be Jack’s primary carer, I can be as patient, as thoughtful, and as loving as my parents have been.

MAD I PR I N GLE

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D

escribing yourself as someone with a disability or difference can sometimes feel hard when that disability is to do with your mental health. There’s this notion that still floats around that the only disabilities that can be considered as such are physical ones, but there are a lot of disabilities that are hidden or difficult to discuss that people end up with misconceptions about.

I was diagnosed with chronic depression when I started university, and things started to make sense. The selfdeprecating humour and negativity wasn’t something everyone experienced as I had previously thought; struggling to get out of bed, wondering what the point in living was. Questioning my existence at all. This wasn’t part of the human condition. Previously, I had played this all down to teenage hormones, as the adults around me had always suggested, but becoming an adult myself meant I was able to look at my symptoms and realise I know myself better than anyone else. Wanting to die isn’t a normal part of everyday existence, but it is something I have experienced on and off since I was 12 or 13, several times a month, almost every year.

MAD I PR I N GLE

I think that’s something that people also have the wrong idea about. I have chronic depression, but just because I have it doesn’t mean I want to die every second of the day.

It means I can have a bad day and instead of moping or getting pizza or calling a friend to feel better, I can spiral inside my head within moments and end up thinking about how I could take my own life for the rest of the day. I consider my depression an inability to cope with overwhelming things like stress and bad days, in the same way that physically disabled people might have an inability to use the stairs. I’m at a disadvantage when it comes to rude strangers or harsh criticism, when it comes to having others decide my schedule or when it comes to dealing with some of the sh*t life naturally throws at you.

I think the worst of myself even when people are telling me those things aren’t true. It really is like those clichés of being in a fog you can’t get out of, or having a weight on you pulling you down.

Writing this is a little strange for me. For almost 3 years now I have been on antidepressants and the results for me have been amazing. At first, the meds made me a lot worse. I cried every single day; sobbing, uncomfortable (very ugly) crying, over almost anything, constantly thinking I was bad or useless or better off dead. I talked to my doctor and tried something new. I’ve tried different doses, but I’m still on those antidepressants today, a few years down the line.

A way to describe it is like hayfever or allergies. Without taking any tablets, you’re still you, you just suffer a bit when the season changes or when you’re in contact with something that triggers your allergies. Taking the tablets won’t change you, but you can cope a hell of a lot better.

That’s what antidepressants are for me. It’s the little things like not having to think about getting up in the morning. Most days I can just do it, without lying around for hours, without thinking about doing things and then giving up and succumbing to a whole day sleeping in bed even if I’m not physically tired. Where I’ll just feel worse and spiral into suicidal thoughts come evening, when I haven’t done the small day to day things that help you feel functional – eating, washing, talking to another person, doing things you enjoy).

Antidepressants help regulate me into someone who feels more ‘normal’ and able to cope. When I feel sad I can acknowledge it as sadness and try to do the things that I know can help, like cleaning my room, watching a film, talking to my partner. Before, that sadness would isolate and immobilise me. I still have some symptoms like insomnia, but it comes without my mind racing with negativity, and is replaced with theorising about tv shows or playing games on my phone.

Interestingly, I found out recently that my father, who I had always suspected I had depression, just started the

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same medication as me in order to help him. Depression can often be environmental and based on circumstances, but it has been interesting to see how genetics in my family have likely played a role.

I really hope sharing this sort of thing can become more commonplace, without negative repercussions. I worried about sharing the fact I struggle some days with my place of work because I worried they would consider me unreliable. But when I’m on my medication, I can get on with things and I’m good at my job, so really taking a day out because you need to get through a depressive episode isn’t something to be ashamed of. No one is ashamed about getting a cold and needing to recover from it. I know I can be good at my job and reliable and have chronic depression at the same time. It’s scary wondering if my medicine will always work – the fact I might be fighting my own brain for the rest of my life. But right now, things are working for me and with every pitfall I face, I’ve managed to work through it.

Finally, antidepressants don’t make me happy. I can experience happiness even on a day where I have otherwise been an uncontrollable mess. But taking antidepressants doesn’t make me euphoric. It makes me feel stable in comparison to when I don’t take them. I can settle into my emotions, rather than them being all over the place, and I am able to face the challenges of the day.

I know some people who don’t think antidepressants are the right choice and think they provide ‘fake happiness’, without knowing that I take them. The same goes for counselling. These things are so easily linked to the idea that you’re broken, or something is wrong with you, and that these things don’t actually help you.

The amount of people who have told me exercise will fix me is astounding. Exercise can help relieve some of the symptoms of depression and other mental health issues, but there’s nothing wrong with people who need support for mental health, just like there’s nothing wrong with people who need crutches. When someone is physically disabled you don’t assume physio will fix them, even if it can provide some help. If antidepressants and counselling weren’t useful and helpful they wouldn’t exist. And anyone at any point in their life might find they need the support that antidepressants and counselling can provide.

Everyone is going through life differently, and that’s ok.

It’s acknowledging and accepting that, which can lead to a more accessible world for everyone. There is no easy disability and there is no competition. There’s just a lot of people going through their own sh*t and keeping that in mind, I think, can make you a more open minded and empathetic person.

AN D R I AN A MICHAE LO UDIS

W

hen I was growing up, I never knew outright that there was a difference in my vision. When you are kids, everyone just gets on and mucks around and has fun.

It’s only when you start school that different things (like different requirements) are made, and that’s when you start to think about it. But it’s definitely more as you grow up that it becomes a bigger part of your life, so I guess that can be negative in a sense.

You have to start thinking about disability and how it might restrict you in the future, because those restrictions are probably going to increase as you get older. But also, as you get older, you realise that it’s part of you and your identity a lot more. You get to explore it and take ownership in a way. That’s when you work out how you’re going to interpret a disability. There are definitely positives and negatives to it.

My disability is that I’ve lost the right side of my vision in both eyes. I’ve had this not since birth - but since I was six months old after I had neurosurgery for epilepsy, but essentially I can’t remember anything else. So unless someone told me that I see differently I wouldn’t know. Which I guess is good, I definitely feel like it doesn’t hold you back as much. I think everyone’s just trying to go through as best they can. I guess it’s the same if you’ve got something holding you back, you just keep trying to get as far as you can.

The main thing is that because you can’t see a physical disability with me, do you disclose or outrightly tell someone that you’ve got a disability? You can’t just chuck it into everyday conversation. But you’re always wondering whether you should tell someone, whether that’s being at college or school, or with friends.

Early on, I would completely integrate into all parts of school and it was great! I was swimming and playing football but then there were times when a teacher would ask “can you come outside and have a little chat” - like once a month or once a term or one of the support team would come round and then I’d chat about how I’m doing. You know that you’ve got a difference and know that you can be singled out, but as you get older it does get easier to deal with differences. If something goes a bit sh*t then you’re like, oh well, it’s not too bad in the grand scheme of things. It gives you a different perspective.

Everyone says I’m really optimistic, which I think I am but I think you have to be. You don’t get anywhere by worrying about what could be in the future. If you have certain barriers that make it difficult then fair enough, but nobody knows what the future holds so go with it. I think having a disability definitely makes you more resilient.

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CHAR LOTTE AGN E W

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I

t is hard to feel comfortable in your own skin when your skin itself is uncomfortable.

Since I began to openly talk about my skin condition, it has become a lot easier for me to accept it as a part of who I am. People often ask how I remain so positive, but the truth is sometimes you have to just get on with it.

In the beginning I spent a lot of time feeling miserable because it knocked off a lot of confidence. As soon as I realised that I was not alone, I began to embrace it as a piece of art despite what it had put me through.

It all started in January 2018 with a few small red dots across my stomach, but soon it spread into a salmon-pink pattern that covered my entire body. Luckily, I could hide it under my beanie and long sleeved knitted jumpers during the colder months. Once I learned that it was an auto-immune disease called psoriasis, it was hard for me to accept at first because it had happened so suddenly.

Psoriasis is a life-long hereditary skin condition where the immune-system attacks itself. There has not been a lot of research to explain why this happens, but we know that it can lead to flare ups which results in dry, painful and itchy skin.

For years my skin has been a little dry, but never had I ever had a flare up like this. It was a shock purely because it had spread so quickly - even the doctors were not sure of what to do. I was given steroid creams for the spots on my body and steroid shampoo for my scalp, all in the hopes that it would clear up the patches and prevent it from flaking so much. I soon learnt that the normal skin cell cycle lasts around twenty-eight days, whereas for somebody with psoriasis is around three to nine days.

Over time my scalp was still dry and the spots on my

CHAR LOTTE AGN E W

body were not showing much effect. Despite the constant visits to the doctors, I was constantly being prescribed more medication. The steroid cream was very tedious because I had to apply it every day to each and every spot. With many of these across my body, the process was very time consuming and I had to get a flat-mate to help me put them onto my back. Every single morning, I had to shower as part of my scalp medication. It gradually became a challenge to wake up with something to look forward to.

As well as the routine, the condition itself was time consuming as it got worse. The itchiness was very distracting and the flakes were very embarrassing. It reached a point where I would wake up in the morning and stretch, only to feel a sharp pain all over my body as my skin would crack open. Moreover, the patches became so thick that I no longer could feel my normal skin underneath. My scalp got pretty bad too, my hat acted like a helmet because I kept scratching it. Even if it was bleeding and stinging, somehow, I still had to scratch

it even though it was making it worse. My skin began to feel foreign – I literally felt trapped in a shell. I felt very depressed because of how restricting the psoriasis got, which made it hard for me to go outside or to see people.

Every morning when picking an outfit, I’d ask myself if I wanted people to see my blood stains in a light shirt, or my skin flakes in dark shirt. Grey became my favourite colour.

Additionally, the hardest thing was not knowing what had triggered it in the first place, so nobody knew how to make it go away. Triggers can include certain food groups like lactose, gluten, nightshades (such as tomatoes and aubergines), refined sugar, alcohol, stress, etc. My mother and I struggled to pin-point what the trigger could be since there was nothing too drastically new in my diet since coming to university. Everybody with psoriasis will react differently to different things, but I felt very alienated not knowing anybody else at university with a skin condition too.

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Grey became my favourite colour For me, this was a turning point. I decided to look up ‘#psoriasis’ on Instagram and I was shocked. As I scrolled through the results, I couldn’t believe how many other psoriasis sufferers were out there with the same skin as mine. Some posts were positive whereas others showed the pain – but both of which brought a huge sense of relief.

This was when I created @itsonlypsoriasis, which is an Instagram account that I use and a visual diary to share my journey and talk to others going through the same thing.

At first, I was hesitant to post photos of my skin.

However, I wanted to share my story to let others know that they are not alone. Consequently, the support that it received was amazing as so many people were very understanding. This completely changed my outlook on having a skin condition, which lead to openly talking about it amongst my friends and family. My confidence grew, so I no longer began to feel ashamed because it made me feel unique.

Even when my scalp psoriasis had caused some hair to fall out, my mother lent me an abundance of patterned head scarves for me to try. I started wearing clothes that I wanted to wear, even if that meant that other people could see my skin. I no longer conceal it so that it normalises something that is already normal. People do notice, but I no longer mind because it creates a discussion and helps to spread awareness. I am honestly so grateful for the people that stuck around to make sure that I was okay. This motivated me to stay positive, so I want to say a huge thank you. The journey has made me realise how important it is to love ourselves and to appreciate our differences. I started going outside more, eating healthier food, socialising as well as doing the things I wanted to without psoriasis holding me back. It may sound cheesy to say this, but colour has been restored to my life again.

It is safe to say that I now feel comfortable in my own skin.

V I CTOR I A H OARE

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I

don’t consider myself to be disabled in the conventional sense in any way, shape or form, but I do have a chronic illness that means I get daily reminders of how I’m not quite as able bodied as I want to be.

I suffer from Ulcerative Colitis, which is an inflammatory bowel disease, so I get inflammation and ulcers along my digestive tract. I consider myself quite lucky because, whilst in the past I have been on daily medication, for the most part my UC can be controlled through diet nowadays.

I think the clearest memory I have from my childhood, when I realised that I wasn’t quite right, was when I was at home and I was having a flare up. I didn’t know what one was then, but for me it’s essentially extremely painful cramps that can often feel as if someone has made me swallow sharp objects and I can feel them pulling on my insides. My mum asked me what was wrong and I sort of brushed it off and just said, “Oh, it’s okay, I’ve just got that thing you get when you get that really sharp pain in your tummy”, and I just remember my mum looking at me and me realising, ahhh, right, you don’t know about that sharp pain people get in their tummy.

So I suppose, whilst I have other memories of doctors’ visits and blood tests and trial running different diets to see if I was intolerant or allergic to different things, that’s my earliest memory that’s so clear and sharp and defining because I was, in that moment, categorically different.

I struggled for a long time in my teenage years after being diagnosed to get a hold of what it was I had. The likelihood is that it will get worse as I get older and I’ll probably have to have a colectomy- aka, part of my colon will be removed and I’ll be pooping straight into a bag. Whilst that idea doesn’t thrill me, it doesn’t bother me like it used to. After you’ve sh*t your pants and vomited blood often enough, you just get used to that kind of other-ness.

Nowadays, the thing I find hardest is when I physically can’t do what other people can. I’m very outdoorsy and I pride myself in being a relatively healthy human. But there are weeks when I feel so sick and chronically tired that I can hardly eat anything that’s not banana and toast, and I have to remind myself that getting out of bed is a genuine achievement even though I had so much planned for the day. I’m stubborn, so not being able to burn the candle at both ends bothers me.

I don’t like to slow down and watch my friends gain ground, metaphorically or literally because I know that if it wasn’t for my UC I’d be right there next to them.

But actually, I am lucky because it could be infinitely worse. On a daily basis I have to remind myself that the things I deal with aren’t normal, and if I have to remind myself of that, they can’t really be that bad in the first place. That’s what I like to think, at least.

H ARR I MCLADY

I’ve put this façade up and I can’t stop it now

B

y definition I am a disabled student, which is a really weird thing to think about. I have Attention Deficit Disorder (ADD), which is like ADHD but without the hyperactivity symptoms of it. It is good that I am considered under the brackets as a university student as disabled, and I am eligible for things that do help me.

I do obviously think there is still a stigma - even to me, as someone who is very open and very confident with themselves – and I do find a little shame in having the knowledge that I am classed as disabled. Sometimes I don’t like to add it when I apply for jobs and things, it’s just something that I don’t feel comfortable doing. Maybe it’s a little bit that I don’t think that I’m in the same category as certain other people.

I haven’t known that I’ve had ADD, in the scheme of things, for very long: I was diagnosed in my first year of A-Levels. For a long time, I just very much got through – not like scraped by, but did well enough without doing that much work at school. Then A-Levels came around and I didn’t do well, and we tried to work out what was going wrong. I just always struggled with keeping on things and focusing on stuff, and then someone was like ‘has no one told you about this before?’ People had made jokes but we’d never sat down and thought about it. It does make sense, and there are things about an inability to keep details, staying on track with things, really struggling to focus. I think there are certain things that didn’t happen at school but did happen at uni: At school you’d have an hour lesson and that was it, then at uni you

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H ARR I MCLADY

can have two to three hour lectures and that just doesn’t work for me. I just can’t focus for that long, and then it just becomes more on me feeling like I’m not doing it right. I think that some people are suited to that style of learning and then other just aren’t, and it really is – for me – a struggle as someone who has to keep saying it to make sure that it works for everyone.

There are also things that I don’t think people like to often think about when it comes to ADD. For me personally, I have a really big issue with relationships and with people. I get really invested in people as my brain is really good at jumping. I’ve had moments where a girl has asked me how my day was and I’ll think how nice it was that they said that, then I’ll think that maybe it’s because they like me and we’ll go out or maybe this is it. I have to stop and tell myself, and it’s really hard to do that on

a day-to-day thing. When I have moments where people stop talking to me or just don’t want to be my friend – that kind of stuff – for some people they can really brush past it but, for me, it kills me. It really, really is tough and is a hard thing to deal with at uni because if you stop hanging out with someone and you’re not in lectures with them then they stop being your friend, and it’s really hard to get back into that place. The knowledge that I haven’t done something is tough to handle. That’s why I think that a lot of people like myself continue on that level of procrastination, because they’re so terrified of what’s going to happen when someone recognises that it’s not going well. That’s why I have such a strong confidence and personality, it’s because behind it I show just how much I’m worried about things. I’ve put this façade up and I can’t stop it now.

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On the other side, if I don’t do anything then that’s also really hard – like having too much time to myself is really damaging because I put myself in positions where I’m not making the right decisions for myself. I will stop eating properly, I’ll stop trying to socialise. It’s trying to find that balance. I get involved with a lot of things – more than what normal uni students do – but for me I need to be doing something. I need to give myself that structure. I do a degree where I do around eight hours a week, but I went to a school where I had eight hours a day. I always had the idea that the degree structure was going to be an issue for me, but I didn’t realise it was going to be that bad.

I think that from diagnosis to where I am now, I am a lot better. But there are a lot of things that I know I can do better. I just don’t think that the way it’s brought across to me means that I’m comfortable saying it – for example,

all of the extra stuff in exams comes under the disabled students’ allowance, so to me it feels like I shouldn’t really be getting this because I’m not really disabled. By definition I am, but there has to be a societal/cultural change in how we perceive disability. On a daily basis, my ADD does affect me. With people that know me, we joke about how I struggle to stay focused, and I’ve been known to just say key words in a sentence because I fill out the rest of the words in my head. Voices is really good for showing that disability is not just physical, it can be mental. It’s getting better, but we can do more.

CAR I N A ADAM F X U D I SAB I L IT Y OFFICER

afterword

I

’m deaf. Just plain deaf. The I-can’t-hear-anything deaf. Get it? Anyway, I wasn’t born deaf, but was diagnosed deaf at 14 months old. My parents were sure that I could hear when I was a baby until they discovered I couldn’t. We are not sure how or why, perhaps an accident or illness? However, that doesn’t change the fact that I’m deaf.

Yeap, frustratingly deaf. Someone needs to create another word for that - I don’t know whether I should love or hate that word, but I grew up with it, live by it, breathe with it.

Yeah, someone also needs to create a sarcastic poem along that sentence. I’m not kidding.

Just because I wrote a poem about it doesn’t mean someone else shouldn’t.

Anyway, the biggest challenge in being deaf is that I cannot understand everything that is being said, word for word. I could understand a gist of what was being said, but focusing on lip-reading and matching it to what I hear through my hearing aid is very tiring. Plus, I have to ask someone to repeat themselves or write things down each time I didn’t understand anything. Doesn’t mean anyone would oblige, though. The first lecture I went to at university was my worst memory, worst impression of the university.

Because the accessibility team did not let my note-taker know that I was to have the welcome lecture on that first day, I had a mixture of negative emotions because I could not understand a single thing the tutors were saying, even though I tried. It was so frustrating I cried. Can you blame me? You try being deaf for a day and see how I feel.

Go on, try stuffing a big piece of thick cotton or something in your ears, try to muffle your hearing, and go about your life for a full 24 hours. How I hear sounds, or even the world, is a hundred times worse than how you might hear.

I think what my deafness affects most is my social life. Due to this I am a little bit unsocial and distant, although I know that no one notices this unless I tell them or hint, which I don’t often. So, unless someone is reading this story, if you care or are curious enough to read this, no one else knows. I think this also affects how I interact with strangers. Due to my course, I have to interact with other people outside of my comfort zone. This also largely affected my multimedia work that required audio, which I had trouble with because I didn’t know how hearing people hear. I sometimes have my volume high, at max, because of how I adjust my hearing aid to being higher or lower.

My experience of being deaf hasn’t changed since coming to university. If anything, I interact more with students at university than at school and college, which I was happy with. But I wished it could be more, which is disappointing to me.

If you ask me whether I like being deaf, I would not answer because on one hand, I have been deaf my whole life. But on the other hand, it negatively affects how I interact with other people.

Hey, can I ask you something?

Can you read how other people feel? Like the saying ‘the eyes are the window to the soul’?

I did not realise this until recently, well, I had the thought from time to time, but I didn’t comprehend this until recently, but maybe because every time I look at other people, my eyes automatically focus on their lips, not their eyes. You look at people in the eyes when you interact with them, yes? But I don’t. It’s like second nature to me, reading people on the lips, otherwise it would be so out of sync I wouldn’t understand what they said.

Maybe this is why sometimes I don’t understand how other people feel. Often I have to ask them how they feel, but I know that sometimes I cross over the line. Even when I try to make jokes, I don’t know if that affects them or anything.

That is why I don’t know what other people think whenever I interact with them, I don’t know whether they enjoy talking with me or whether they are forcing themselves to. Perhaps this is why I am a little unsocial, which, like I said, is not very noticeable.

Doesn’t mean I like to force it on them though. I can’t control people’s thoughts, but I don’t want them to interact with me just because they feel obligated to. I want them to interact with me simply because they want to talk with me, to me, just for who I am. Not because I’m deaf. Just for this I hate that word.

If you ask me whether I am happy being at uni, I would hesitate because the happiness I feel, is very limited to parties or other occasions. I do not have many friends here which I could hang out with apart from after lectures or group discussions. I really do want to have a friend which I could hang out with whenever we like and not because I have to ask them if they would like to hang out with me. When I want to hang out with other people, often I have to be the one to ask. Nobody asks me.

I deal with the isolation mostly by reading a book because they make me feel something.

Whether that be sadness, joy, anger, anything. They make me cry and laugh so hard.

Not because they are that good, but because I can feel something just by reading stories.

Sometimes I watch movies whenever I have the time, whenever I’m not feeling pressured by deadlines, which I hate, by the way! If I’m not reading, then sometimes I like going out on walks. Yep, alone, even in the dark sometimes. No, I haven’t been ambushed, if that’s what you’re worried about.

I think my favourite author is Michael Morpurgo, I like the book about a boy on a ship. I learned the ‘London Bridge is Falling Down’ song from that book. That is the only song I can sing. I can’t sing other songs at all. I’m also tone-deaf, oh the irony! That was the first book I read everywhere I went, on walks and on the bus on the way home! Sometimes I bumped into walls because of that. My poor brain.

Plus, whenever I’m somewhere with my coursemates or friends, like at parties or the awards last year, I’m often deep in my thoughts, about everything like ‘what could have been if I weren’t deaf’, ‘if only I wasn’t deaf’, ‘if only I could speak’, and little depressing thoughts like that. I get the urge to cry whenever I’ve thought about wanting to talk with them but couldn’t without making it any more awkward. I’m not sure whether I should be happy that they don’t look at me because I get a little teary-eyed, or angry that they don’t notice this at all. Get what I mean? I’m not good at this sh*t. Sorry for the language! I am polite. I think I’m a great actress because I can be good at making myself look so easy to read that they are misguided by how I truly feel deep inside. I’m so good at donning a poker-face mask.

Since they, or you, don’t see me, I could very well be dead.

ACKN OW L EDGE M E NT S

Harry Bishop Sarah Redman Kacey Gaylor Jasmin Jelley Enrico Artuso Matt Taylor

Director & FXU President Community & Welfare Project Manager Coordinator Coordinator Art Director Graphic Designer

Danielle Goodland Lexi Goodland Lydia Allegretto Harri McLady

Photographer Editor Reporter Reporter

Jamal Clarke Dean Pomeroy Chris Slesser

FXU President Student Experience FXU President Exeter FXU President Falmouth

Our thanks go to FXU for their constant and ongoing support in facilitating this project and to Falmouth University and the University of Exeter.

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The views expressed within this publication are the individual’s own and do not reflect those of the universities, FXU and the team involved in its production.